Sunday, April 17, 2011

No medications, really?! A product review, spreadin' the word.

I know I belong to a handful of people who use natural and Chinese medicine to deal with EDS and dysautonomia. That's right, no pharmaceuticals for this girl. I'm very thankful to have some really incredible people involved in my care that make it possible. Also, that I live in a place where I have easy access to it all. I'm someone who likes to kick it old school, and rely on what the earth has provided.

Please keep in mind I'm not a doctor, and will never pretend to be one. I'm primarily under the care of a Naturopath, acupuncturists, a chiropractor, and an Awesome GP. I have about 15 other doctors and specialists, but I don't really bother with them to much. The products in this post were recommended for ME, but if something peaks your interest, it shouldn't stop you from looking into it. Who knows, it may be something that really helps, and you don't know until you try.

I'm going to cover the things I use day to day, or when something crazy pops up. Which,we're all very familiar with. Let's get this party started............


This is Calendula in a creme form. It works well on friction rashes (I sometimes get them from the seams of my clothes and my AFO's) and for heat rash. I tried the creme for tape rash, but it stung. I think it's because tape is my arch-nemesis, or maybe it's just the nature of the rash.

Plantain salve is good for tape rash and it can go in wounds. It's also really good for getting off the adhesive that likes to linger on your skin for days. So much better than using alcohol and it's good for your skin.

And then I found Calendula in a salve too. It helps with wound healing and has been fantastic. I use it on really bad tape-rash and on Jerome.


This stuff is awesome. It's called Zheng Gu Shui, and is used for pain control. You massage it into sore, tight muscles for relief and cooling effect. The smell is kind of potent (it will clear your sinuses) and it can be messy because it's a thin liquid. I use it when big muscle groups are all acting up at once.

Analgesic plasters are like my boyfriend !! They come in a big roll and you cut the pieces yourself. I use this stuff all the time. It's really good for any kind of muscle pain and has given me some of the best relief ever. I'll usually stick it on before I go to bed and leave it on all night. The only down fall is they're also kind of stinky or aromatic, (a mix of menthol and herbs) and can leave some pretty nice rashes from the adhesive. It's totally worth it though, I don't know how I lived without it.


I don't know about everyone else, but I can be a bleeder. Yunnan Baiyao (Paiyao) is bad-ass! It was used by warriors centuries ago on the battle fields. It helps with bleeding, soft-tissue contusions and pain. I use it when I've had J-tube issues/recovering from surgery. If you're like me, and can't swallow pills or caplets this stuff doesn't taste nearly as bad as any pharmaceutical. It sounds weird, but it tastes like a bunch of herbs (which it is) and like feeling better. The contraindications include: No beans,fish, cool and spicy foods. I'd deal with that any day over the crazy pharmaceutical side-effects.


St.Francis' Deep Immune, I put it in my fluids concoction everyday. It's an immune enhancer, antiviral and energy tonic. I use it to help prevent infection, especially with Jerome and to keep my immune system strong, as getting sick with anything will make dysautonomia go crazy.

This has got to be the best hand-sanitizer ever!! I go through a lot of it, and not because I'm a germophobe. I live in the city, take public transit and work with kids who are pro-stars at sharing all kinds of germy goodness. I've been using this for just over two years now, and haven't been sick with anything since (aspiration pneumonia doesn't count). Not only does it smell good, but it's alcohol-free so I don't have to worry about having kiddos from work using it. I pretty much use it in place of rubbing alcohol with all of Jerome's stuff.

Hydration, blood-pressure and tachycardia

I've been using CALM for about 3 years now and think it's great. It helps with muscle tightness, tachycardia and hydration in general. Also to help relax the mind and regulate the nervous system. It dissolves in hot water, and doesn't really taste like anything so I mix it with tea or put it through Jerome. It also comes in a yummy lemon-raspberry flavour too! I use it at night, about an hour before bed to help wind down.

This has been key in keeping my dysautonomia under control. Liquid electrolytes sans chemicals. It keeps me hydrated and really helps with muscle cramps and tightness. It doesn't really taste like anything and is meant to be added to juice or water. I just throw it in my fluids concoction for Jerome. Not only is the product awesome, but the company is fantastic. They really have the best interest of the consumer in mind and have some of the most excellent PR. ttp://

There's nothing horribly special about using salt to maintain blood-pressure. I use sea salt because it contains the trace-minerals we need and it's better for your body than table-salt. I buy it ground up into almost a powder, so it can be quickly dissolved in my fluids concoction that goes through Jerome.

I left a few things out and will post about them later. I hope you can all find things that work for you, and make you feel good. Everybody should be able to live a happy and healthy life.

"Let food be thy medicine and medicine be thy food."

Saturday, April 16, 2011

Dropping the F-bomb

This post contains language that is not appropriate for children or anyone who is uncomfortable with swearing. For anyone else, I think you may like it.

While there are many times when swearing is inappropriate (especially around little ears), there are definite opportunities where it makes for good expression.

One of those times is when you're trying to describe your pain. I think most of us are well educated when it comes to EDS (if you have it) and can "talk doctor", because we've all gone through years of advocating and fighting for what we need. It's always nice to be able to throw in a little F-bomb as it makes for a really good adjective. Especially because pain is subjective and let's face it, those pain-scales are crap. A lot of us have a really high pain tolerance, but when something hurts it really effing hurts.

The other day I was getting changed after my acupuncture treatment and was feeling fantastic! I bent over and did something to my shoulder/back/neck. It really effing hurts anytime I use my neck or am holding my head up. Same with using my arms...Thinking it's a subluxed rib or vertebrae. Either way, holy fuck does it hurt. I've been incapacitated from pain for the last 3 days. Jerome is still taking his sweet time healing, I can't lay on my stomach, and getting an adjustment with the chiropractor would hurt J even more. This is rather annoying since I've been doing so well. The weather this weekend is absolute crap so I'm not missing out on too much. I was hoping to get a ton of studying done and more organizing. I can't do much of anything...Fak!

This has been a popular saying among the FB bendy community. I say it all time...

Here are some comments I got on it:
-I hope you do feel better tomorrow! :( EDS sucks!

-I am having a crappy pain day too-and you made me smile-so thanks love!

-Feel better soon! We are matching right now! :p Well me with my vista anyway. :(

I spy a neck collar?

-You spied right...had an awesome treatment, got dressed, bent over and now I've
funky neck/traps woot! At least the rest of me feels okay.

-Lots of soft hugs, and I couldn't agree more with the message!

-You really shouldn't be so shy, speak up when something ticks you off.

-Fuck You seems to be your favourite expression. Nothing like a swear word to release some frustration. Keep expressing yourself, Nakki

-My shoulder is dangling out of the socket as I write this. Hope you feel better and get that collar off soon! Hugs

-I hope your shouler goes back where it belongs soon. I love your dedication ♥ Gawd, we sound so effed up...boring is over-rated anyway.

-We call it dedication... others call it mental illness.

- I hav a pretty bad cold mixed with pots...still i Send u a few spoons my dear!

-Tomorrow........... ♥ Your pic sums it up nicely. ♥

-Say it loud! Say it proud!

-keep it coming ! :) That is what I think too!

-my sentiments exactly. love, hugs and nothin' but good Ju Ju coming your way! ♥

Then one of my friends sent this my way:
It made my day :)

I think it's important to be able to have some deliciousness when feeling gross. We go through enough everyday and really, being able to eat something yummy is a right! Or at least it should be. What do you like to eat when you're feeling like ass?

You've got to check this video out, it's brilliant!

"Be who you are, and say how you feel because those who mind don't matter, and those who matter don't mind."

Tuesday, April 12, 2011

Coming back to life, it's totally possible.

I have about 5 posts that are half-written. I can't seem to spit out what I want these days, or it could also be that there's so much going on. A lot of changes have been happening, most of them really good.

I've been able to sit out in the sun and do my readings/study for school and it's been fantastic. I've also been meeting with my OT a lot, and we've been making some pretty cool writing tools. Still working out the kinks as to what works best, but I think it's also a day to day thing because our bendy bodies change so much, even throughout the day. The biggest news is that my dysautonomia has gotten so much better. I've stayed away from the ER for 3 months now, which is a new record.

Check out the video, it will explain more.

Now, this is not to say that I've been "cured" or anything from dysautonomia, but the symptoms are being managed and we've found what works. That in itself, is worthy of celebration in my eyes. Considering I lost a year and pretty much everything else in my life, I am beyond elated at the progress and now stability. It's so nice to be able to focus my energy on what I want, instead of just surviving.

I hope you can all find something that works for you, where you can feel good in every possible way. There's nothing like coming back to life...nothing....

p.s. Jerome 2.0 says "Hi". I still can't lay on my stomach and because of my awesome proprioception, high pain tolerance and poor wound healing, I keep hurting myself. It doesn't help that last week someone caught their bags on my tubing and yanked it out while I was going down the stairs. Here's to hoping Jerome fully heals soon. I'd like to be comfortable again as it's been almost a month, but it took forever to heal before so I'm not surprised.

"Develop an attitude of gratitude, and give thanks for everything that happens for you, knowing that every step is a step toward achieving something bigger and better than your current situation."
(Brian Tracy)